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Advice from parents of children with cancer and blood disorders

Parent2Parent reflects the feedback of other parents who have been where you are now. Remember, you are not alone. We have all been there. The children of these parents have been treated at Texas Children’s Cancer and Hematology Centers. You are probably going through a multitude of emotions. At the same time you are being given a lot of information. Most of the time it probably seems overwhelming. Because it is so difficult to absorb all of the information made available to you, we recommend that you read over this section every once in a while. You will find something new each time you read it. We hope that this section will be helpful to you. We hope that you can take some comfort in knowing that others have dealt-successfully-with some of the same problems and feelings. We understand your uncertainty about what the future holds for your child and your family. But there are many positive experiences that can result from this difficult time. Many families develop a greater appreciation of their time together and become much closer. You will discover you have more strength than you thought. You will discover many caring people and helpful organizations. You will learn new things about yourself and about the human spirit. You will even have fun, as unlikely as that seems right now. Each of us wishes this had not happened to our child. But it has happened, and in sharing our experiences with each other, we enrich our own lives and the lives of our children.

Coping with the diagnosis

Coping as a parent

When our child's cancer was first diagnosed, we felt like the only ones in the world with this type of problem. We didn't know what to do or what to expect.

In addition to fear was the grief: grief over the loss of my "old" way of life. The old life consisted of only imagined fears, fears that, when you had them, were considered paranoia. After the diagnosis, I longed for the days of only imagined fears.

I thought that I would never stop wishing for those days. I never stop wishing for things to be better, but that intense grieving did fade away.

It is helpful to us to keep on top of what is going on with our child. We find it important to be aware of our child's protocol, medications, and procedures.

I kept notes of everything that was going on. It kept my mind straight.

We took lots of pictures; my son always enjoys looking back at the early days in the hospital.

As a single parent I found it useful to get in touch with other single parents.

Explaining to friends and family

We found it was best to be honest with our friends because they imagined that it was much worse than it really was.

Members of our family would come on weekends and be in the room with our daughter when the doctor came around. They could then ask their own questions.

Talking to your children

Explaining to your child

My child was old enough (5) to understand that he was very sick. I told him everything he wanted to know. For me, the best way is to be very honest and tell him the truth.

I've found that being open and honest with our son has helped a lot. He understands and wants to know everything that is going on with him.

We've never held anything back from her (age 6). We tell her everything we've been told. We tell her about the procedures. Children understand more than you think.

I found it helpful to tell our son (age 7) just enough to satisfy his curiosity. Then as he had other questions I would answer them as simply as possible.

We explained exactly what was wrong with her (age 9) in detail that she could understand.

It was important to our child to know that he would be returning home (from the Hospital).

Explaining the diagnosis

We were very honest when we told our other children about the cancer diagnosis. We didn't sugarcoat the news, especially with the older children. We tried to answer all of their questions, but we weren't afraid to say, "I don't know," if that was the truth.

I just told my 3 year old that his brother was sick. I take him to Clinic with us when we don't have anything painful done so that he will know what "Clinic" is when we are talking about it.

Child life specialists can work with you to explain the diagnosis to your child and siblings in age appropriate ways.

We did not withhold information-good or bad-from our children. This helped prevent misunderstandings and unnecessary fears when they saw us depressed or crying (which happened even when our child was in remission).

Helping them adjust

I try and let my child's sister be as much a part of things as I can. I also tell her it's okay to ask questions any time she wants.

We used the Hospital's psychiatric liaison service for one of our children. This opened the door for my family to get acquainted and feel comfortable with the psych professionals, in the event they were needed for anyone else.

When we needed a dentist, we took all the children to the dentist so that the siblings could share at least one medical experience with their sister. We give each of our children special time with us.

We remind all the children often how much we love them and how special they are to the family and us.

When we couldn't be with our other children, we made arrangements for them to stay with favorite relatives or friends. This way their time was spent getting extra attention and having lots of fun.

Letting other parents help

In the beginning it seemed difficult to get from one day to the next. It was reassuring to meet other parents; especially those further along in their children's treatment, and see that they were still in one piece, getting on with the normal routines of life.

We walk down the hall and see a smiling mother whose child has cancer, too. We are not being punished. It's so nice to walk down to another room and talk to another mom.

We found that talking to other mothers was important. While friends could offer comfort and support, other parents with children on the service truly understood what we were going through.

Life in the Hospital

Packing for the hospital

For short Hospital stays, borrowing toys from the playroom, and books, videos/DVDs from the library allowed us to bring less baggage and still kept our child-and us-occupied.

We packed quiet activities for times the playroom was not open. We took some snack foods, books to read, and a TV guide.

We brought things that would make us and our child more comfortable: a comforter for the bed, pictures, posters, videos, games, blankets, her favorite toys, my favorite coffee cup. We made her Hospital room our home away from home.

Bath toys were comforting to our child (age 3).

We brought no-sting bubble bath for our child (age 4), as well as a soft toothbrush and tearless shampoo.

A nice treat for me was scented soap. It made the room smell pleasant after bathing.

We packed clothing for me and my child in the same suitcase, to help eliminate luggage in the hospital room.

For planned long-term stays, we took the luggage home and brought it back when it was time to go home.

At home I kept a suitcase packed with underwear and toiletries, in case we had an unplanned admission to the hospital. I packed two outfits, wore one, and did laundry every third day.

Making the adjustment

To deal with a long-term hospitalization, my son (age 2) needed his usual play routine of playdough, building blocks, and stories. This helped normalize hospital life. Returning to what was most familiar helped both of us cope with our new lifestyle.

When our son's (age 3) cancer was first diagnosed, he had a hard time getting adjusted to the IV pole. He would take off running, forgetting that he was attached to it. We gave the IV pole a name. We told our son that he had to wait for his "wagon" to catch up with him. To this day, whenever he sees an IV pole, he thinks it is a wagon.

We picked one staff person who never did "ouchies" to be a friend. This was important in the beginning and helped build trust with the professionals.

We met so many doctors. We wrote down their names and one distinguishing feature to help us remember who they were.

Playtime

At first, we enjoyed the playroom simply because it divided up the day. I gradually realized that the playroom sessions, under the guidance of the child life specialist, provided therapeutic play for my child.

We found that it was important to play with our child and to invite visitors to do likewise. Our child enjoyed a new face and company just as much as we did.

Fresh playdough and cookie cutters was an activity that we all (children and adults) enjoyed. We stored them in a plastic box to keep clutter under control.

Our baby (14 months) is crawling. We bring a small rug to the Hospital so he can crawl on the floor and play with his toys as he does at home.

We brought a small area rug to give the hospital room a more "homey" appearance. Our child (age 11) enjoyed getting down on the rug and playing, and it got him out of bed, too.

We selected several of our child's favorite toys, games, and books to remind him of his regular home life. We changed playthings on a weekly basis to add variety and to keep boredom to a minimum.

Even when our son (age 2) was very sick, with a fever and other discomforts, he still wanted to play, if only for a few minutes a day.

We stored crayons, magic markers, paints, coloring and activity books all in one plastic container.

Reading and videos

The children's library has books and tapes available to lend, and the librarian would read to our child in his room.

We found paperbacks for parents available in the children's library. Parents leave a used paperback when they take one.

We had a movie night: we got a new release and the kids all went into one room and watched the movie and had their favorite snacks.

Your free time

I brought my address book. Hospital stays were a good time to get caught up on letter writing.

I packed projects to work on like needlepoint and knitting. They helped me deal with free time in a different environment.

I did cross-stitch and used the completed projects as thank-you gifts to friends and family for their help and support.

Laundry

I found that Fab "One-Shots" simplified laundry needs: no spill worries, and they take up little space.

I appreciated having to laundry room on the 16th floor so I could pack lighter.

Food

Our child's grandfather kept a supply of fresh fruit in the room, to make it seem more like home.

We kept a supply of "Top Shelf" (no refrigeration needed) microwave food for us and our child.

We found it handy to bring snack foods for long stays.

Our son didn't like the food, so I brought extra money for McDonald's.

We fed our child little cans of his favorite foods between meals.

We had fast food delivered to the hospital room: pizza, submarine sandwiches, Chinese food. There is a menu book available from the secretary on the unit of local restaurants.

We would check with the other parents down the hall to see if anyone wanted to split the cost of a pizza or other food.

Miscellaneous supplies

Many things were hard to find in the hospital. I found the nearby drugstore very useful.

Medicines and Side Effects

Our child took the pill swallowing class offered by the psychology department. It really worked and she takes her medicine in pill form now.

Our son had problems taking any medication in liquid form because of having to take liquid prednisone. We asked the nurses if we could try giving him his medication in a pill or capsule. When given the choice of the bitter liquid prednisone or a small capsule, he quickly caught on to swallowing his pills even though he had just turned three years old.

Our baby (14 months) balked at any liquid medicine. We found it easiest to crush a tablet and sprinkle it on his favorite food.

We found it was important to report any unusual behavioral changes or physical reactions to drugs, medications, or procedures to the nurses and physicians. Our "gut instinct" in what was and was not normal in our child was useful for the doctors in determining a potential problem or solving a problem.

The steriods caused great changes in our daughter's personality. We were having violently ugly talk, mean and nasty, from a six-year-old child.

I could not predict when our son (age 5) would be shrill or quiet. I didn't think people would believe me when I said he used to be good. I finally figured out that the personality change was a temporary effect of the medication.

Our daughter (age 6) had very thick, long hair. I took the news about the hair loss very hard. I took the advice of another parent: if the child doesn't know that losing his or her hair is possible, it will be hard on the child when it happens. I decided to tell her about the possibility of losing all her hair the same week that her cancer was diagnosed. She didn't seem to mind. She did want to know if she had to wear a wig. She didn't want to wear a wig.

During her induction therapy our daughter (age 6) would watch her hair fall out when I brushed it and watch me for a reaction. I'll admit it was hard not to show emotion when chunks would come out. She never lost all of her hair, and it grew in as the long strands continued to fall. All of that time she kept her spirits up and talked about all the different hats and colors that she would wear if her hair decided to fall out completely.

At first our daughter (age 9) preferred caps when her hair fell out. Then I got her hair bands with bows and decorated them. Now she prefers nothing on her head.

Clinic Visits

It's a long wait, so we take things to keep the kids busy. We try to do a little something after Clinic, even if it's just getting a candy and a Coke. It adds a little fun to a Clinic visit.

We found bone marrow tests and spinal taps the most stressful procedures for us and our son. He (age 3) fights every procedure and cries pathetically. It twists me up on the inside to see him go through this. Five minutes after the procedure is over he is smiling and playing with the doctor. He seems to sense that what is being done is for his benefit.

I tell my son (age 5) what is going to take place before we get to the Clinic so he is not surprised. He does better when he knows exactly what to expect.

We took our child to the zoo to ride the train before or after each visit. Preferably after, since it gave our child something to look forward to.

Our son was crazy about Hot Wheels cars. We gave him a new car every time he had a Hospital or Clinic visit. He is now 16 years old and has been off treatment for many years, but he still has his collection of Hot Wheels and they are very special to him.

We had to come in from out of town. Even though we had a relative to stay with, sometimes we chose to stay at the Ronald McDonald House because it was such a special treat for our two children.

School

Video visits from classmates were a real pick-me-up for our child. It was an incentive to keep up with schoolwork.

I went to my daughter's (age 9) school with pictures of her and explained about her chemo, how it works, her body changes, and her outcome. I explained about cancer in children's terms.

When our son (age 7) went back to school, his attention span was shorter and his grades dropped. But this was okay with me.

We asked our social worker and child life specialist to go to our child’s school and talk to his class before he came back. It really made it easier when he went returned to school.

About Life

Our biggest problem was keeping up our normal discipline. If we didn't, it caused a bigger problem. Our child would try to get out of something at school with a stomachache. We had to learn when to get excited and when not to and to understand that our child could be manipulative.

The father of one of our son's friends didn't want his son playing with ours. He was afraid his son would get attached to a child who might die. I told him that you can't protect a child from everything, and instead he should think in terms of what his son would gain by having our child as his friend. He needed to think what his son could learn about life and what his son would miss by not having ours as a friend.

We try to live life as it comes and to its fullest.

I found my faith really helps.

We try to keep life as normal as possible.

Getting Help

We used the Pedi/Psych [Pediatric Psychiatry] Service from the beginning. We found that we needed more than the usual means of support-doctors, nurses, social workers, and child life. Pedi/Psych provided us with critical support at the direst points. We used them throughout treatment. Their support was constructive and positive.

We were so pleased with the Pedi/Psych service. It was important that our entire family participated in it. We wished that we had started with the service sooner in our child's treatment.

Our social worker suggested a local community counseling service. They met and talked with the whole family.

A special thanks to the families that helped contribute to this article

Don & Nancy, parents of Matthew, age 14 months
Mary, mother of Eric, age 2
Nancy, mother of Adam, age 3
Pat, mother of Joanna, age 3
Diane, mother of Devin, age 4
Janice, mother of Evan, age 4
Tally, mother of Elissa, age 4
Julane, mother of Justin, age 5
Marie, grandmother of Garret, age 5
Charloote, mother of Minnie, age 9
Gloria, mother of Rachel, age 6
Jo, mother of Rosa, age 6
Kelly, mother of Dennis, age 6
Lorraine, mother of Hunter, age 6
Debbie, mother of Jacob, age 7
Cathy, mother of Steven, age 11
Patricia, mother of Richard, age 11
Parents of Matthew, age 1